Newbie - Chronic Back Pain advice.....

Hi, I am a newbie to the site. dont know whether I am in the right section... I have a severe progressive idiopathic scoliosis (18 yrs) am now in my early 40's. Remarkably I am certainly a unique case..... I had the birth of my first child in my 20's, I had an epidural during the birth... upto that point I had never had any issues or back pain! fully athletic...

3 weeks after the birth I realised I had one hip higher than the other so went to the docs and then sent to consultants who found a 50 degree curve... this is mostly unheard of and the doctors were intrigued to say the least. I had not only a thoracic curve which is lodged under my rib, but a bad rotation, I saw 2 surgeons who refused to operate due to the risks been too high....

I was put on co proxamol which did work for many years then had to change due to the coproxamol been taken off the market... So put me onto tramadol which at the max dose 8 a day with diclofenac this did not take care of the pain fully just soldiered on as you do.... now 18 yrs later I have had major issues with my coccyx, it has moved down slightly and is causing me chronic chronic pain, I cannot sit due to this and have to have special aided cushions - not nice....

I have difficulty standing up straight due to the scoliosis and my mobility has gone so am now in a wheelchair.. I have just been diagnosed with fibromyalgia also... I then got put on pregablin which is a real nasty one but all the others I tried never did anything and didnt even touch the sides. I still have chronic pain and have to clock watch for my medication as the pain is so bad it makes you breathless... I have just had numerous cortisone injections and had internal coccyx manipulation which was bloody awful and sadly nothing worked!..... finally I have problems down one side, cannot lift my arm and probs with my leg too.... no strength and feels weighted hard to explain,....

I have just had my last mri and to top it off i now have a Hydrosyringomela which is a fluid filled cyst in my spinal cord which is damaging my nerves, this is what is driving my arm and leg useless! I just wondered if anyone has symptoms similar... on the plus side the pregablin is taking care of the fibromyalgia my other aches have disappeared, any suggestions for help would be grateful as I am feeling quite deflated now you can only stay positive for so long until it gradually runs into negativity... I have to take a mild sedative to sleep which is helping the sleep side.

many thanks

welcome angel, glad you found our corner of the world (at least the web)

I will let those more versed with chronic back pain to give you advice, but hope you find some support
and comfort among us here. We all know about serious pain, our common denominator.

Good luck to you, and never give up hope.

david

Welcome EL-Angel and yes I think you found the right place and we are glad you did.

Im sorry that you have had a lifetime it seems of dealing with spine issues and pain. We live with that hope that each new day brings new treatments at least and new cures at best. Neurological issues are the hardest to treat and it seems everyone is so different in what works and what doesnt. Even surgeries are a gamble.

Many here have been dealing with issues like you most of their lives while others are just starting. Everyone here no matter what issues and problems they have understand one common thing,pain chronic pain,pain that takes many many different things to control and what that pain means to our lives and those of our families.

You find some of the most knowledgeable and caring folks here then you can imagine and when all things have been offered and nothing else seems to help the prayers and healing thoughts sent your way have meaning of which there is no describing.

Welcome to the forum and we hope you find some of this experience of use to help so that your pain is lessened.

Vickie

First, you certainly have every right to feel the way you do. You will notice that most of us around here are supportive, even if we do not share the same exact condition or severity. And as far as I know, there are no doctors here, just fellow sufferers who try to help out however we can.

I too have scoliosis, but not nearly to that degree. It can become progressive, as anything that pushes the body off center will continue to do so.

And a lot of times it does start in the pelvic girdle. One misformed vertebrae there can cause the whole spine to have to compensate for it, and then it becomes like the Leaning Tower Of Pisa, which is currently just held in it's semi-upright position with massive counterweights at it's base. They still haven't figured out how to fix that thing.

Surgery is sometimes the "fix", but that is a decision between you and your doctor(s), and often reserved for early intervention, or for life-threatening issues, like impaired lung function. Though that cyst should be something I would think they would want to be aggressive about (my opinion), unless they are trying something non-invasive first.

And it's great you have found something that works for your fibro. Many can tell you, that's a difficult thing to do on it's own.

I welcome you here. I send you my best. Keep us posted.

Thank you all for your kind words, I am still waiting on an appointment so will keep you informed. I too am worried about the cyst as this is a progressive disease...

will definitely keep you posted....

thanks all